Jorga's Story

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Jorja's Story

Jorga Was Born Seven Weeks Premature And Diagnosed With Truncux Arteriosus

When little Jorja arrived seven weeks premature in Western Australia, little did her parents know the long journey that lay ahead of all of them. Jorja was diagnosed with Truncus arteriosus, a rare condition in which the two large arteries of the heart, the aorta and pulmonary, combine into one large vessel.  This causes a very high blood flow to the lung which will make the sufferer short of breath and leads to poor weight gain.  Serious infection is also of major concern.  Whilst medicine is given to help initially, the problem must be rectified by operation within the first few weeks of life.

After three weeks in the neonatal intensive care unit in Western Australia, the tiny girl was transferred to Brisbane Mater Children’s Hospital, East Cardiac Ward in Queensland.  That's a distance of about 3,600 kilometres, from one side of Australia to the other. In more ways than one, the long journey had begun.

Jorja's Dad had to return home to work in Western Australia but mother Sandra remained in hospital with little Jorja as they tried to achieve her goal weight of 3.5kg and get her well enough for open heart surgery. On two occasions, the brave little girl was discharged from hospital only to be re-admitted urgently to Paediatric Intensive Care Unit (PICU) with respiratory arrest and placed on a ventilator for two weeks. Thankfully, Jorja achieved the necessary weight and underwent successful heart surgery.

Jorja returned home to Western Australia to the delight of her whole family. Her progress, slow but steady, with the need for oxygen every day. A courageous little girl from a brave family, overcoming distance and a major health obstacle.


For More Information On Kids With Heart Disease

 Heart Kids


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